Breast Cancer Diagnosis, advice please!!!

[reformedrethug]

I really need some advice from the good people here at DU.

I received some devastating news yesterday from my oldest daughter, my former Mother in Law (I say former because we have always gotten along great even tho her daughter and I don't) was diagnosed with from what my daughter said terminal Breast cancer. Apparently this is a fast growing type because earlier this year she had her yearly mammogram and it came back clean but she found a couple of lumps not that long ago the size of golf ball and they are malignant.

My dilema is this, I get my girls a couple of times a year for visitation, they live in Florida and I live in Ohio, and my time with them for the summer is coming up in July. Do I be selfish and bring them up because I want to spend time with them, or do I not bring them up so they can spend as much time as they can with their grandmother. I just do not know what to do here, what if I bring them up and she takes a turn for the worst, how hard is it to change their return leg on their airline tickets, can I get them back in time, am I being selfish because I want to spend time with my daughters, ARGHHHHHHHHHHHHHH I am so torn here.

If I can ask one thing tho, can we keep this non political so I can focus on what is important in this case? Thanks!!

[DangerDave921]

1. questions

How old are your kids? How terminal is the MIL? What do your kids want to do? If they're older, they can participate in the decision.

I'd lean toward visitation. You can always get a return flight if they need to get home.

Just out of curiosity, what are you doing living in a state where your kids don't live?

[reformedrethug]

4. My girls are

17 and 12, will be 18 and 13 in October, I haven't asked them yet as the youngest does not know about the cancer yet, I do know tho that my youngest will be devastated by this news because she is very close to her grandmother. When we get the tickets we obviously get roundtrip tickets, I am just wondering how much of a pain it will be if we have to change the return date.

Their mom and I are divorced and they moved to Florida.

[DangerDave921]

6. go with visitation

It is almost impossible to predict time of death, so don't start a deathwatch on grandma. If they need to get back in an emergency, changing a return flight is a couple clicks on the computer. Might cost a few bucks to change it, but that's life.

I hate when the ex-wife (or whatever custodial parent) takes the kids out of state away from the other parent after a divorce. It's really not fair to the kids to deprive them of their other parent. Parents need to realize it is not all about THEMSELVES. It's about the kids. Have you ever considered moving to Florida?

[reformedrethug]

14. I wouldnt call it a "deathwatch"

so to speak, I am just concerned about my youngest as she is very close to her grandmother.

I agree about them moving to florida but whats done is done as far as that is concerned, we have adjusted to the situation as best we can. We all have cell's thru verizon so we have constant communication back and forth which has made it easier. If I was not remarried I would be there already but as it is my wife has 23 years in her current job and it would be stupid to throw that away as far as her retirement is concerned, IOW its not a viable option at this time.

[Jeanette in FL]

2. Ask the girls, what they would like to do

Tell them that you understand if they would like to spend time with their grandmother.

You are a very generous person to think of someone else even though you would love to have your girls.

[bean fidhleir]

3. Yes, ask the girls.

Let them know that you are completely okay with their choice, whatever it might be. If things are intense back there, they might welcome the chance to get away and decompress, even if briefly. Or they might feel that they need all the time with her that they can get. It should be their choice, thought depending on their ages you might want to read between the lines a bit.

[reformedrethug]

5. My oldest has been

very rational about this whole situation so far. She told me that you cannot change/affect what has happened, but you CAN affect your reaction. Very mature for a 17 year old.

[OregonBlue]

7. Talk to your kids and talk to their grandmother. If she is really close to your girls,

she might have some good insight about what is the best thing for them and for you. I agree that if it is very fast growing, it might be best for them not to be there since it may be a very intense time and Grandma may need some time to get her own head together. Call the airlines and find out what the change fee is. Some airlines charge a lot to change a ticket, others not so much.

[NotThisTime]

8. I'm sorry...

I think you are just going to have to wait on the decision as to what to do... what do the doctors think, what is their projection, etc... if it's fast, it could be very fast, or not... let them get those details, then when the youngest knows talk to them about it. Perhaps you could spend a week down in Florida over the summer possibly? I know this must be a difficult time.... I'm very sorry...

As for switching flights, it's often less expensive to just buy a new ticket, or since you're in Ohio, you could always drive in an emergency, it's not that far is it? We're driving from Williamsburg and it's 12 hours...

Good luck....

[reformedrethug]

15. I just got finished

with a text conversation with my oldest and she definetly wants to come up because she feels that she will need a break from the situation. As far as the progression of the cancer not all of the tests have come back yet so there is still some unknown going on right now. As of right now my youngest has no clue, or at least has not been told yet, they are waiting on her son to get down there next week to tell her that it is cancer and then they will tell my youngest.

As far as driving down, it is an option but not one we would want to use, its about a 22 hr drive from nw ohio to where they are in florida (they are near Ft Myers).

[fight4my3sons]

9. I would ask the girls.

As a child of divorce whose mother moved her to another state and only got to see her father during the summer months. Those summer months meant a lot to me. Seven weeks in the summer goes by all too quickly. As you said, you can get them back home to grandma if needed, but do give them the choice. My grandma (paternal) died of cancer when I was 12 and it was only a few weeks before I made it to my dad's for the summer so I didn't get to see her. :(

[iamjoy]

10. You Go There

You go down there.

If you get along with your former Mother In Law, you should see her too, although, if you don't get along with her daughter (your ex-wife, I presume) you will need to time that visit carefully. I don't know what you mean by not getting along either. Can you be cordial and polite, or does it always turn into a fight when you are together? My parents are divorced, but my Mom and Dad get along okay now. And my step-father is friendly with his ex-wife, so much so that he went to her mother's funeral a few years back (of course, at that time they'd been divorced for over 20 years).

That being said, your daughters' needs should be the first concern. If you feel it would be traumatic for them to see their grandmother so ill, I would say have them come up and visit. If you feel she is healthy enough your daughters should have an opportunity to enjoy what time they have left for her. Next up is the grandmother - does she want her granddaughters with her? If so, honor her wishes.

[reformedrethug]

17. Me going down is not an option

I just started a new temp position in Feburary and just found out yesterday that my end date has been extended and they are working on some "creative" financing to try to hire me on full time. I just found that out yesterday so during the day I was in an awesome mood, till the phone call, talk about a kick in the gut!

My ex's and my relationship has changed over the years and we do get along fairly well now. We can talk without fighting and can even hold a decent converstaion about things that does not concern the kids. We have been divoced since 92 so its been a few years and we have been able to get along lately which is a good thing for the kids sake.

My daughters needs and feelings are my first concern which is why I started this thread, this is unknown territory for all of us and I dont really know what to do yet. I have watched somebody die from cancer and it is not pretty but at the same time it IS a part of life and you cannot shelter your kids for ever.

Since their grandmother does not know the diagnosis yet I am going to have to wait on that to see what she wants.

[REP]

49. I'll say you do get along if you two had a kid 4 years after your divorce

[Rosemary2205]

11. Emergency flights and ticket changes

My humble advice - not worth the bandwidth it takes up mind you.

Bring the kids to Ohio - unless they make a point of asking to stay home. At worst you'll have a $100 penalty to change the flight back to Florida if things get dicey for Grandma. (I think Delta is the highest and they are $100)

Make sure to buy a ticket that can be changed.

http://www.delta.com/traveling_checkin/ticket_changes_refunds/ticket_changes/index.jsp

[FloridaJudy]

40. Airlines will sometimes change the rules

In cases of life-threatening illness. I had to get a letter from hospice, but my travel agent got me on a flight on Christmas eve in less than twelve hours - and at half-price - when my mother was dying.

But I'd check with the MIL and the girls and see what they want to do first.

[leftynyc]

12. Talk to your daughters

I'm assuming they know what is going on. Making the decision as a family will go a long way in making this easier for everyone. Also speak to your mother in law and see what she has to say. She may not want them to see her sick.

[YvonneCa]

54. You've got to talk to everyone involved...

...your daughters, for sure, your MIL and even her family. And then make your decision out of love for your daughters and MIL...not for selfish reasons. Your daughters will always be grateful for that.

Cancer is a terrible thing, but...as your family is about to learn...there is a silver lining. It helps you prioritize better, figure our your own values and value that family,love and life are what's most important.

:grouphug:

[Uben]

13. By all means...........

....take them to see their grandmother! They will treasure the memories of those last visits forever.

That said, don't give up on the cancer treatment. They have made great strides in breast cancer treatment recently (my wife is a 5 yr survivor) I understand some cancers are very aggressive, but even they can be treated with some hope of success.

(btw, we have a cancer forum here, and there are a lot of good folks to consult there)

[reformedrethug]

19. They live

10 minutes from their grandparents. And according to my daughter not all of the test results have come back yet, they are lucky in a way because my ex works with the doc's daily and my daughter volunteers at the hospital with the same doctors so if its out there they will more than likely try it.

It just sucks that they are 1200 miles away and I cannot be there physically for them, but we have 24/7 access thru our cell phones and they know they can call at anytime day or night if they need to talk.

[Breeze54]

16. Bring them for your visit... A neighbor of mine

had "terminal breast cancer" back in the early 80's, before they had all the new and experimental drugs they have today and she was 'terminal' for years!!!!!! No one can predict when she may pass. She may beat it, she may survive for years. You also should talk to your 13 year old about it asap! She knows more than you think she knows.

[reformedrethug]

18. They do not want to

tell her before they tell the grandmother because she may let it slip.

[Breeze54]

20. Even grandma doesn't know? I didn't see that part.

Yikes....

But my point is that 13 yr olds 'pick up' on hushed and whispered conversations and could cause
them needless worry with 'not' knowing what is going on but knowing 'something' is going on.

[reformedrethug]

22. The only people that know are

my ex and my oldest daughter, they are waiting on her son to get there thursday before they break the news to her, and hopefully they will have the rest of the test results by then so they should have a better picture of whats going on as well by then.

[Contrary1]

39. How old is your girls' grandmother?

Unless she has been declared incompetent...I have a big problem with her not knowing.

[Rosemary2205]

42. HIPAA makes that illegal.

medical personnel aren't allowed to tell ANYONE your medical information without your signed approval unless there is a legal document of guardianship or declaring power of attorney for healthcare. I know this for a fact. I can't even get medical information on my own husband (who is now mentally disabled post car accident) unless the person talking to me has seen the signed paperwork from the court - and Medicare, nor the SS Administration will tell me anything over the phone, period.


If Grandma has not been legally declared incompetant and the doctor told her daughter before telling her then the shit should hit the fan.

[reformedrethug]

48. and how do you know

that paperwork was not signed??

quit making this out to be some sort of conspiracy, I started this thread because I wanted some advice on how to handle this, not to get some sort of lecture on what is legal and not legal. You do not know the situation down there, my ex wife is about to lose her mom AND dad as he is diabetic, has been since he was a teenager and his body is starting to shut down.

My ex has FULL medical power of atty for both of her parents and is able to make decisions for them.

[Rosemary2205]

52. The problem is

that doesn't kick in unless the patient is fully unable to make any decisions for themselves. The whole purpose of HIPAA was to stop from happening what is happening with your ex's family. It is simply illegal to tell the family and NOT a conscious, reasonably competent patient.

I know you started this thread because you are concerned about your daughters being brought so far away from Grandma at a difficult time, and I know you have little or no ability to affect what is going on with Grandma. I guess I lit on this part of the situation because of my own situation and my absolute unwavering belief that what is going on with your ex's family is just plain morally, ethically and probably legally wrong. I just hate to see it happen to someone. Wait a day until she's out from under the anesthesia of the surgery that's fine, but as time ticks by it gets to be a problem, IMHO.

[Contrary1]

53. She most likely knows anyway...

Nobody needed to tell me. And, in the last few years I have met many women who put off going to the doctor because they needed a few days to get things in order before hearing the actual words.

[reformedrethug]

47. you people are making wayyyy too much

out of this, she will know the results as soon as her son flys in which is the same day that the doctors will have the final test results.

[REP]

50. Lots doesn't add up

The results of the surgery/biopsy being withheld from the patient

Divorced in 1992 but the youngest daughter is 12

Doctors discussing confidential medical information with everyone except the patient

[reformedrethug]

51. Again the results

are being witheld until her son can get down there
we got back together for a few years, not remarried just back together and that is where my youngest came from
my ex has full medical POA over both of her parents

[Mezzo]

21. Maybe you could go an visit them? I'd honestly ask their mother...

even if you don't like her anymore. You once loved her, and she is about to lose her mother. She may need her daughters around. OR she may need to know that they are off in a more relaxed atmosphere (Ohio with you) so that she might come to terms with this quietly.

I would extend the olive branch to your ex, and tell her it is her call. You will do whatever is best for the girls at this difficult time.

[reformedrethug]

23. we get along now for the most part

but as I said in an earlier post me going there is out of the question due to job situation.

Its just a wait and see situation now from what I know so far. It all depends on the rest of the test results now, I thought they had them all but I was wrong on that bit.

[reformedrethug]

24. Well a bit of an update

My daughter told me that they removed the lumps but were not able to get it all so I am assuming that it has spread which is not good. I will keep you updated.

Thanks for the ideas and support, this is just going to kill my youngest daughter as she is really close to her "nan"

[yardwork]

25. I'm sorry about your daughters' grandmother.

You sound like a caring person, who is thinking about how this effects everybody in the family. Good for you. It's clear that you care about your daughters' feelings, your former mother-in-law's health, your sense of loss, and even your ex's feelings.

I think that your daughters are lucky to have such a thoughtful father, your former mother-in-law is lucky to have you in her family, and even your ex is lucky to have you as the father of her children.

[whistler162]

26. My advice besides prayer is....

wait until everyone is told and the prognosis is better understood.

Then talk to your ex and your former in-laws and see what they think should be done. Then talk to your children and let them know what was discussed and then have their opinions heard and then make a joint decision.

Cancer is a strange thing and the human spirit even stranger in dealing with it. My dad succumbed to Leukemia in about 6 months, my mom is 11 years out from breast cancer, the next door neighbor is almost a year out from diagnosis of terminal cancer in her major organs.

So my advice is, don't make any firm plans until talking to everyone. Once your MIL knows send her a teddy bear or a living plant and just be there for your kids and ex as much as you can.

[reformedrethug]

27. Update to the update

I talked to my ex, actually she called me and we talked about the situation.

Its not good my former MIL had a mammogram 4 months ago and was clean, recently she felt a lump near her armpit so she had it checked out. What appeared to be 2 lumps has turned out to be 1 lump. This lump goes from just under the nipple area back to the chest wall then out to the armpit area. The doctor thinks it may be 2 different types of cancer since the tumor is so large. They were not able to get all of it out when they did the surgery and are doing some testing to see how far it has progressed, if it has migrated, and what types of cancer she has.

As of today she has not been told but they think she knows something and I would agree.

[Horse with no Name]

29. Very odd to have two different types of cancer

However, it is not odd to have a primary diagnosis of breast cancer, and have a secondary tumor occur in a different part of the body (but no matter where it is, it is still breast cancer).
I would definitely hope if a physician did diagnose it as such, that a second opinion(preferably from a board certified oncologist) would be in order. Post haste.

[reformedrethug]

31. Not as odd as u think

A good friend of the family had cancer in both breasts but it was two different types of cancer, also there is 3 types of cancer a woman can have in the breast area depending on where it forms according to my ex who happens to be an or nurse.

[Horse with no Name]

32. Not going to argue the point

There are several types of cancer a woman can have in the breast, the point of contention is that it is very odd to have them at the same time. It has to do with how they react to estrogen or progesterone or neither...that also has to do with the effectiveness of long-term treatment.
That being said, good luck to you and yours.

On edit:
Here is some information for you and your family that might be helpful
http://www.medhelp.org/forums/BreastCancer/messages/3843.html

[reformedrethug]

37. I see what your saying

and yes it is odd which is why the head doctor is presenting her case to a group of doctors to try to figure out the best method of treatment.

[FloridaJudy]

55. Not so odd

The same thing happened to a very good friend a few years back. Clean mammogram in January, found a lump in June. They went in, and she had two different kinds of breast cancer. We lost her around Thanksgiving.

This lady grew up downwind of the atomic tests in the fifties and sixties. I always suspected that might have contributed to the problem, particularly since two of her sisters also developed cancer in their forties, though not the same kind. Or maybe some families are just plain unlucky.

[Contrary1]

57. My mammogram was "clean" also...

Found the lump seven months later. I picked up all prior mammograms to take to the breast specialist. Oops, it had shown up on the film, after all. In fact, the tumor had been circled, and had an arrow drawn to it, along with a big question mark. Guess someone at the hospital was having a bad day, just broke up with their significant other, getting ready to go to lunch...or something. It never got written up on the report.

The bottom line is I found it. Mammograms are great, but never rely strictly on them. If you find a lump, never accept the "wait and watch for six months" approach. The radiologist that ran the diagnostic mammograms suggested just that in her report. When the doctor read that, he rolled his eyes and said, "The only way I will be watching this tumor is on a dish in the lab".

[FloridaJudy]

58. The radiologist went back and reviewed ALL

My friend's mammograms. Nothing but a "stable" lump that had been biopsied years previously and found to be benign, and which hadn't changed in a over a decade. Her doctors theorized that possibly the cancer had been growing behind the benign lump (which was also still there, and still benign) which masked it on X-ray. Her cancer was so rare and aggressive that it was also quite possible it really hadn't been there six months previously. Something like a million-to-one chance, and my friend was just plain unlucky.

When I found a lump, I was in the radiologist's office the next morning. She said "Looks benign. Let's ask a surgeon". The surgeon said "Feels benign. Lets ask the pathologist". I insisted on having it all out, and fortunately the pathologist agreed that it really was benign. Scariest damned week I've ever lived through, though.

Bottom line, mammograms are a tool - and a good one - but they're not infallible, even with a conscientious expert reading them.

[Rosemary2205]

43. How can she agree to surgery and not know why she had it?

[reformedrethug]

46. again she knows why

she is having surgery, she just does not know the results yet.

Your reading wayyyyy too much into this, let me break it down for you:

She found lumps in her breast
scheduled surgery to remove lumps
multiple lumps turn out to be one large lump
lump is malignant
family is holding back on telling her she has cancer until her son can get down there

understand now?

[sandnsea]

28. Let them choose, lean towards grandma

They'll never forget you putting them first. Maybe you can move your visitation to some other time of year, or ask the ex for an extra holiday or birthday.

[reformedrethug]

30. There is a few things

that go on during the time they are up here which is why they come up at this time. My girls are HUGE Danica Patrick fans and they will get to go to a meet n greet and spend the weekend at the track at Mid Ohio. They want to come up, my ex wants them to come up if for nothing else than a break from the stress.

[sandnsea]

hiccup

[sandnsea]

34. It's great you have such an open relationship

That you could all work it out and come up with the best solution for the girls. Good luck!

[DU GrovelBot]

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[Kat45]

35. Why haven't they told your MIL that she has cancer yet?

It seems odd to me that several people would know about it, yet the person who has it doesn't know. Is she very old or not with complete mental faculties? It just sounds strange that the doctors told the relatives but not the patient.

[reformedrethug]

36. Its a very interesting situation

My ex wife is an or nurse and is good friends with the doctors that are working on her mom. The reasoning behind not telling her is they are waiting on my ex brother in law to get down there so they can all be there for her. You gotta understand this family, NOT the most functional model out there LOL

In fact the head doc on this case invited my ex wife to join in on some group discussion about her mom's case due to the uniqueness of this case.

[Rosemary2205]

44. This is illegal

there is something not adding up to this. I'm not doubting you but I think what you are being told is not quite right. Excepting emergency life saving surgery - and a breast lump isn't it - there's not a surgeon in this country who would do surgery on a patient without their informed consent and signed HIPAA forms. It just does not happen.

Unless I misunderstand, the story is they did a non emergency surgery on a woman without telling her why. This makes no sense. Your Ex could be Florence Nightingale herself and no doctor would risk losing his/her board certification by doing such a thing.

[reformedrethug]

45. you misunderstood

She is the one that found the lumps, she knew that they were going to try to get the lumps out, nothing abnormal going on. The only difference is she has not been told that she has cancer yet, they are waiting on her son to get down there before she is told that she has cancer.

[Lorien]

38. Could you come down to Florida to spend time with them? n/t

[reformedrethug]

41. again, as I have said previously

job situation pretty much prevents it for now.

[wildbilln864]

56. Marijuana cures cancer!?

This may be bullshit I don't know. I suspect it's true though. :hi:
ETA: Another very important video.

[reformedrethug]

59. Update as of yesterday 5/17

She now knows what is going on, the outlook is still unknown as they are still looking at the tissue that was removed. I will be talking to my girls later on today ad I am sure they will fill me in.

Personally I would not have told her anything until I got all of the test results back from the doc, but thats me. Knowing you have cancer is bad enough, not knowing what type, has it spread, how far has it spread, and the diagnosis is MUCHHH worse, IMHO that is.

[reformedrethug]

60. Ok here is the latest, and its not good.

My ex wife attended the cancer board meeting about her mom's case and the results are not good.

In the two tumors that they took out they found 3 types of cancer, her left breast is basically full of tumors and they think it has invaded the chest wall and possibly the lymph node system.

Today is the meeting with the doctors and the family to discuss the situation and treatment options if any exist.

Fyi for those that were questioning how my ex was able to get this information due to HIPPA, my ex MIL signed the papers giving the doctors the permission to discuss her case with her husband and my ex wife.

IOW its not looking good for her and that really sucks because she is a good person, we always got along great even after the divorce from her daughter.

Folks positive thoughts and prayers are definetly needed here.

[reformedrethug]

61. Ok I now have a full update

They are going to do a bilateral mastectomy, then chemo. It appears that it may have not spread but they do not know for sure. They will know more after the mastectomy.