Hodgkins 2004, now Br Cancer.. treatment decisions.. help!

ChristineCP

Hello everybody
New to this site - and need a little direction!
3 weeks ago I had a right mastectomy and TRAM flap reconstruction for DCIS. I had Hodgkins Lymphoma in 2004 (had chemo and radiation - no problems).
Today I had a scary appointment with an oncologist who outlined every single side effect of chemotherapy and how much more likely it was that I was going to have bone marrow problems, neutropenia etc.. because I have had chemo before, apparently it makes it more likely I'm going to have a worse time around this time.. Has this been the case with anyone on here?
I am fine with having Tamoxifen (hormone receptive tumour), but need to work out whether its worth having chemo as well - I'm terrified of making things worse for myself (short term and long term)..
Any help appreciated.

regards
C x

Alexis F

I never had chemo Christine,
I never had chemo Christine, so, I can't imagine having it once before and then facing it again. What I do know is that I would do anything to stop the bc so that I could live a full and healthy life.

We each make our own decisions. Get all of the info from your doctor's and decide what is best for you.


Good luck, Lex

Gabe N Abby Mom

Hi Christine, Is it possible
Hi Christine,

Is it possible that your doc was just doing the CYA (cover your a$$) because of the recent news about Robin Roberts? I have heard a number of women say, 'but my doc never told me that might happen' in one form or another. So I think the docs are now more careful to include that in their conversations.

Yes, chemo has both short and long term effects...and different chemo meds have different effects. Sadly, none of us have a crystal ball and the science is not available to predict which of us will have which effect, or how severe those effects will be. So how do you make a decision?

In my case, I gather as much information as possible, discuss options with the people that matter, and then go with what feels right at the time. I have an aggressive sneaky nasty cancer that keeps rearing its ugly head, so I am aggressive in my treatment decisions. I never want to look back and think I could have done more to fight...I don't want any 'woulda coulda shoulda' regrets. I want to be here and enjoy my family as long as I can. For me, life is not about why me? or what if? Life is about what surrounds me at this particular moment.

BTW, I will be starting my 6th chemo med soon, all for inflammatory breast cancer. The first (a combo of 3 kinds, TAC) was far worse than the others have been so far. Side effects of the last two really have not been bad. For me, the worst of it has been the fatigue and the neuropathy. Do you know what chemo your doc is prescribing? Chemocare.com is a good resource for info about the specific meds.

Please keep coming back. I think you will find this to be an amazing group of people. I know I wouldn't be sane without them.

Hugs,

Linda

Noel

Alexis F said:

I never had chemo Christine,
I never had chemo Christine, so, I can't imagine having it once before and then facing it again. What I do know is that I would do anything to stop the bc so that I could live a full and healthy life.

We each make our own decisions. Get all of the info from your doctor's and decide what is best for you.


Good luck, Lex

Wish I could offer help with
Wish I could offer help with your decision, but, I truly can't. If you trust your doctor's and are informed of everything, you will make the right decision.

Best to you,


Noel

MAJW

Gabe N Abby Mom said:

Hi Christine, Is it possible
Hi Christine,

Is it possible that your doc was just doing the CYA (cover your a$$) because of the recent news about Robin Roberts? I have heard a number of women say, 'but my doc never told me that might happen' in one form or another. So I think the docs are now more careful to include that in their conversations.

Yes, chemo has both short and long term effects...and different chemo meds have different effects. Sadly, none of us have a crystal ball and the science is not available to predict which of us will have which effect, or how severe those effects will be. So how do you make a decision?

In my case, I gather as much information as possible, discuss options with the people that matter, and then go with what feels right at the time. I have an aggressive sneaky nasty cancer that keeps rearing its ugly head, so I am aggressive in my treatment decisions. I never want to look back and think I could have done more to fight...I don't want any 'woulda coulda shoulda' regrets. I want to be here and enjoy my family as long as I can. For me, life is not about why me? or what if? Life is about what surrounds me at this particular moment.

BTW, I will be starting my 6th chemo med soon, all for inflammatory breast cancer. The first (a combo of 3 kinds, TAC) was far worse than the others have been so far. Side effects of the last two really have not been bad. For me, the worst of it has been the fatigue and the neuropathy. Do you know what chemo your doc is prescribing? Chemocare.com is a good resource for info about the specific meds.

Please keep coming back. I think you will find this to be an amazing group of people. I know I wouldn't be sane without them.

Hugs,

Linda

Linda said it best!!
I think Robin Roberts current situation has scared many people...I'm like Linda, I want all they can throw at me! I had chemo 3 years ago, was in remission for 19 months when the beast reared it's nasty head again... I too, like Linda have a very aggressive type, only mine is triple negative...took oral chemo for 7 months, went into a clinical of another oral chemo and back on IV chemo now...I've got to much to live for to worry about what might or might not happen 5 years down the road!

But it's every person's personal choice to make....for me, it's "Bring it on!"

Wishing you the best in making your decision...Keep us posted, we care..
Hugs,Nancy

cathyp

Had Hodgkins and Breast Cancer too
Christine,

I had Hodgkins lymphoma in 1989 and was treated with mantle Radiation. In 1994 I had a recurrence and received ABVD, chemo. As you know with HL, we don't have a choice, we need chemo and/or radiation to survive.
In 2007, I had a double mastectomy for IDC in 1 breast. LCIS was found in the other. The breast cancer was from my previous radiation treatments. Radiation for the BC was never an option for me as I all ready received damaging doses and could not be "reradiated". I got oncotype testing done and it came back chemo would reduce the recurrence rate by 2%. I opted out because of all the late effects from the previous rads and chemo. Stopped Tamoxifen after 2 mos because of a TIA and uterine problems.

I think it was the right thing for your doctor to outline all of the possible effects. You really need to make an informed decision. You are right to question the short and long term effects. Because I was treated well before you, I have cardiac and pulmonary problems, to name a few, but I had no choice if I wanted to survive.
Breast Cancer is so differnet from HL, you have choices, depending on the stage, which makes it agonizing trying to decide. If you aren't sure what to do, consider getting a 2nd or 3rd opinion from doctors who have treated Hodgkin Lymphoma patients. There are Adult Long Term Followup clinics for patients like us. They deal with our similiar situations daily. I see a doc at Memorial Sloan Kettering Cancer Center. In addition to him, I sought out 3 opinions.

I kinda cringe when I hear patients saying they wanted everything thrown at them for even a reduction of 1-2%. I often wonder if their doctors took the time to inform them of possible side effects from treatment. I realize though, everyone has to do what is right for them.
Good luck with your decision. Time is on your side, you won't have to make a decision immediately.
Best wishes,
Cathy

MAJW

cathyp said:

Had Hodgkins and Breast Cancer too
Christine,

I had Hodgkins lymphoma in 1989 and was treated with mantle Radiation. In 1994 I had a recurrence and received ABVD, chemo. As you know with HL, we don't have a choice, we need chemo and/or radiation to survive.
In 2007, I had a double mastectomy for IDC in 1 breast. LCIS was found in the other. The breast cancer was from my previous radiation treatments. Radiation for the BC was never an option for me as I all ready received damaging doses and could not be "reradiated". I got oncotype testing done and it came back chemo would reduce the recurrence rate by 2%. I opted out because of all the late effects from the previous rads and chemo. Stopped Tamoxifen after 2 mos because of a TIA and uterine problems.

I think it was the right thing for your doctor to outline all of the possible effects. You really need to make an informed decision. You are right to question the short and long term effects. Because I was treated well before you, I have cardiac and pulmonary problems, to name a few, but I had no choice if I wanted to survive.
Breast Cancer is so differnet from HL, you have choices, depending on the stage, which makes it agonizing trying to decide. If you aren't sure what to do, consider getting a 2nd or 3rd opinion from doctors who have treated Hodgkin Lymphoma patients. There are Adult Long Term Followup clinics for patients like us. They deal with our similiar situations daily. I see a doc at Memorial Sloan Kettering Cancer Center. In addition to him, I sought out 3 opinions.

I kinda cringe when I hear patients saying they wanted everything thrown at them for even a reduction of 1-2%. I often wonder if their doctors took the time to inform them of possible side effects from treatment. I realize though, everyone has to do what is right for them.
Good luck with your decision. Time is on your side, you won't have to make a decision immediately.
Best wishes,
Cathy

Sorry...
I still want all they can throw at this! Like you said about your lymphoma, you had to to have your treatments to live and you no doubt choose the treatment.....well, it the same for us with STAGE IV bc...if we don't have all they can throw at it we will die much sooner rather than later...I choose, God willing, Later! So please don't cringe for us even if it increases our chances to help by 2%....I mean no disrespect, as we all have to do what is best for ourselves...even those who aren't stage IV...it's always a personal choice...and we need to respect each others choices...And my oncologist has always gone over all side effects of all Chemo drugs...I can't worry about all the what the what if's,5 years down the road, if I were lucky enough to make it that long...

Wishing you well...
Hugs Nancy

cathyp

MAJW said:

Sorry...
I still want all they can throw at this! Like you said about your lymphoma, you had to to have your treatments to live and you no doubt choose the treatment.....well, it the same for us with STAGE IV bc...if we don't have all they can throw at it we will die much sooner rather than later...I choose, God willing, Later! So please don't cringe for us even if it increases our chances to help by 2%....I mean no disrespect, as we all have to do what is best for ourselves...even those who aren't stage IV...it's always a personal choice...and we need to respect each others choices...And my oncologist has always gone over all side effects of all Chemo drugs...I can't worry about all the what the what if's,5 years down the road, if I were lucky enough to make it that long...

Wishing you well...
Hugs Nancy

Hi Nancy,
I did mention in my post, treatment decisions "depending on the stage". BC is so confusing. Is it possible there would be factors that chemo would only help by 1 to 2% for someone with stage 4?
Forgot to mention to Christine, my friend had DCIS and she went with a double mx, no radiation or chemo. She was unable to do tamoxifen for clotting reasons. That was 5 years ago and she is doing well.
Christine, your head must be spinning with so many treatment decisions and hearing of our choices all over the spectrum. You'll find similiar discussions on the Long Term Effects from Treatmment Board too.
Best wishes,
Cathy

epark

cathyp said:

Hi Nancy,
I did mention in my post, treatment decisions "depending on the stage". BC is so confusing. Is it possible there would be factors that chemo would only help by 1 to 2% for someone with stage 4?
Forgot to mention to Christine, my friend had DCIS and she went with a double mx, no radiation or chemo. She was unable to do tamoxifen for clotting reasons. That was 5 years ago and she is doing well.
Christine, your head must be spinning with so many treatment decisions and hearing of our choices all over the spectrum. You'll find similiar discussions on the Long Term Effects from Treatmment Board too.
Best wishes,
Cathy

Christine when my doctor
Christine when my doctor recommend chemo it was like I got punch in the stomach but i didn't think twice to doit..2 % to 3% might be what keeps me here to see my daughter get marry.....whatever decision you make we will be here to support you


Hugs
Eva

ChristineCP

epark said:

Christine when my doctor
Christine when my doctor recommend chemo it was like I got punch in the stomach but i didn't think twice to doit..2 % to 3% might be what keeps me here to see my daughter get marry.....whatever decision you make we will be here to support you


Hugs
Eva

Thank you!!
Thanks everybody for all your thoughts and for sharing your journeys through this.
I was quite terrified after that first oncology visit a few days ago - and like Cathy, I am wary of aggressive treatment that might cause longer term issues - I guess because I feel this BC has appeared because of treatment for HL 8 years ago.. so don't want to opt for treatment that causes horrible things in my fifties.. However, I do want to sort it out - bigtime!
I'm not sure about the Robin case - will look it up.
I live in Australia - here there is no rebate for the oncotype test, and I don't have a spare $4000 unfortunately. I understand its quite an accurate risk assessment method of determining whether chemo would be helpful - but I can't help feel that, similar to all tests and risk ratios, its not infallible.
I am trying to get another referral to an oncologist in Sydney for another opinion before deciding what to do - it is quite agonising as Cathy stated.

Lots of love to everybody
Thanks once again
C xx

DebbyM

ChristineCP said:

Thank you!!
Thanks everybody for all your thoughts and for sharing your journeys through this.
I was quite terrified after that first oncology visit a few days ago - and like Cathy, I am wary of aggressive treatment that might cause longer term issues - I guess because I feel this BC has appeared because of treatment for HL 8 years ago.. so don't want to opt for treatment that causes horrible things in my fifties.. However, I do want to sort it out - bigtime!
I'm not sure about the Robin case - will look it up.
I live in Australia - here there is no rebate for the oncotype test, and I don't have a spare $4000 unfortunately. I understand its quite an accurate risk assessment method of determining whether chemo would be helpful - but I can't help feel that, similar to all tests and risk ratios, its not infallible.
I am trying to get another referral to an oncologist in Sydney for another opinion before deciding what to do - it is quite agonising as Cathy stated.

Lots of love to everybody
Thanks once again
C xx

Did you get the referral?
Did you get the referral? Let us know what you decide and good luck!


Hugs, Debby

LoveBabyJesus

Hi -- Like everyone else
Hi -- Like everyone else said, it is a very personal decision.

But isn't yours in situ? I thought you didn't need chemo with this type (at least in most cases?). Perhaps you need a second opinion? For me, I was dx at 32 with invasive ductal carcinoma. I had no choice but to get chemo because of my age (had grade 3). If a Dr. feels I need a certain treatment to try and recover -- and if there are no other choices, I would take all I can to fight. It's better to look back knowing you did all you could, than to wonder what if...

Good luck!