Hodgkin's Survivors/Secondary Breast Cancer

I didn't have HL,but had a neurofibrosarcoma growing around and into my spinal cord mid chest. It was diagnosed when I was 14. After having a thoracotomy, where the tumor was partially resected, I under went high dose radiation to my chest and back. I have been doing well for the last 45 yrs, but was diagnosed with bc in august of 2011 at 60 yrs old. The bc was found in my left breast after I had had a mammogram.It was listed as stage 11,dIc grade 2to 3,ER+PR pos. 0 nodes. Also, since I elected to have a bilateral mastectomy, they found bcis in the right breast.At the same time as my mastectomy,I had tissue expanders placed by a plastic surgeon. 4 months later I had breast implants. Since that time, I have healed very well. My surgeon did a nipple sparing surgery, but I had to have a 2nd surgery to remove the right nipple because the tumor margins were too close to the nipple. At the end of october I am scheduled to have a RT nipple reconstruction using my own tissue. When thats all healed, I will have the RT nipple tattoed to match the left.Hope I don't have to go to a tattoo parlor. The onco test indicated that I did not have to have chemo since I was post menopausal and I couldn't have rads again. Being high risk for blood clots,the only other options for me were the aromatase inhibitors. I started on anastrozole, but after 6 to 8 weeks I developed severe depression,along with fatigue and cognitive problems.I had to get off it.My quality of life was zero. The next one I tried was aromisin. Within 6 weeks I developed the same severe sx and have had to stop that one as well. Now,my MO tells me the only one left that I can take is Femora. I can't start it until I am completely over the depression as it will be very difficult to reverse if I fall into it again. At this point, I am seriously weighing my options and may decide not to take it at all.

My biggest worry regarding side effects is depression. That is the one thing I cannot deal with. I am not sure which drug I will be taking yet since I'm not sure of my menopausal status (I've had about two periods in ten years). Depression is worse than cancer.

I was originally on Tamoxifen with no problem.  After 2 1/2 yrs, Dr. switched me to Arimedex.  I had a difficult time with that drug, definitely affected my mood in a negative way.  Dr. said that some women who have difficulty with Arimedex do better with Femara.  I switched and fortunately it proved to be true for me.  I hope it does for you as well.  If you are interested in joining a group, check for cancer support centers in your area.  Sometimes it can be helpful to talk to other women in your situation.  Many cities have good non-profit groups that offer in and post treatment support groups.  Your nurse navigator might be able to recommend one.

Hi Lori and Hodel, I was also afraid of the AI's so I am starting with tamoxifen even though I have a clotting disorder (also now on coumadin).  I have had no problems with the tamoxifen.  The first few weeks I did feel a little crabbier than usual and worried about depression but now I seem to be fine.  I will probably switch to the AI's at 2 1/2 years and see how that goes.  I agree that I might just take my chance with recurrence if the side effects were that bad. 

Hi Livelover!! Thanks for the wonderful update! You just made my weekend!

I don't think I ever mention this but I am 2 years out from BC and 23 years out from HL. Please keep posting progress it really lifts spirits.

Hi Ladies,

I'm a 'virgin' to this or any forum and have never commented on a post but this is close to home!!

I've just read through majority of these posts as I too am a Hodgkin's Disease survivor!

First diagnosed in 1996 on my 18th Birthday with Hodgkin's Disease Stage 3.... I started on ABVD and relapsed 3 months later,   had some other chemo (not sure of name) along with stem cell transplant. Along with Mantle Radiation 39gy not sure how many times .

I'm now 34 and have a gorgeous little boy who will be 3 on Christmas Day!

I self felt a lump in right breast in August and thought nothing of it....was concerned but knew my Mammo was coming up in 3 weeks time so plodded along as usual feeling fine and dandy..no other symptoms or anything so thought nothing of it!

My mammo showed a little lump, so was rushed from a mammo to an ultrasound which was scheduled anyway for my thyroid nodules!! 

I had a biopsy on both Thyroid and breast 1 week later to be told nodules were benign, thank god and breast was malignant!

I opted for a lumpectomy a week later and sentinal lymph node removal at the same time.

2/2 nodes came back positive so I had to have an axillary lymph removal which was last Thursday.

IDC 16mm Grade 3 (CT / BONE scan came back all good) except for a small lung nodule which I've been told was scar tissue from radiation all those years ago. (never previously had a ct scan so not sure how long its been there for)  

Results back in that the remaining 8 they took out were negative (thank goodness). Found out that these were taken out as the radiologist wanted to re-radiate if C was found in other nodes!!

Now Onc appt tomorrow .. knowing I need to go through chemo again is draining me and mentally I'm preparing myself for it.... I know i got by when i was 18 even though its 'blocked' out of my mind....I know previously I use to have chemo every 2 weeks and managed to still go out clubbing with my 'gorgeous wig' back then and I know now that I still need to go out and enjoy life with my little man but can't help feel down...I have a supportive family, husband and my little boy knows somethings wrong with mummy (as I break into tears and he tells me 'don't cry mummy') and its hard when I look at him I burst out crying thinking the worst...but seeing your stories has made me think I NEED to think POSITIVE THOUGHTS I NEED to live to see my munchkin go to his first day of school, graduate, marry etc I WILL SURVIVE.!!!!!!!

Just a question though, is there anyone that was diagnosed with BC, see a fertility specialist? and if so, (and perhaps you can inbox me if you prefer) with outcome of what you did or didn't decide to do.....I'm in two states of mind at the moment.

Do I opt for another playmate for my son or do I stop knowing that I have a happy and healthy son now and to be happy with what god has already given me considering !!  ???

Thanks

Thanks for your reply DeborahC

I know I had a tablet called Primulate when I was having my previous treatment all those years ago basically to stop my ovaries producing so I didn't get a period throughout chemo and radiation...(it worked) !! however this time around being ER + just wasn't sure . I'm scheduling a appt with the fertility specialist but don't want to delay my chemo starting either so I'm just a little confused...lol.....oh decisions....

I'm thinking a little like you, do I really want more doctors visits when I'm blessed with one child !!

Thanks again

I did not receive chemo for my Hodgkins, only radiation.  For the BC I had Doxorubicin (Adriamycin), Cyclophosphamide (Cytoxan) together.  Then I had Docetaxel (Taxotere).  They split them up in order to go easier on my heart as a precaution.  I wish you the very best and a speedy recovery.

Hi Traii,

I really liked my original radiation oncologist so I found out where he was working (I moved to another city) after my BC diagnosis.  I was able to ask him some questions that helped me make a decision.  I don't know if that is an option for you but thought I would mention it.

Take care 

I like your attitude!  I hope everything goes well and this is all behind you before you know it. 

Take care 

Hi Traii, was just wondering how you are getting on with chemo. I'm starting mine soon - cyclophosphamide and Taxotere. I would have had 'E-CMF' but can't have the epirubicin. I had quite a traumatic consultation the other week. I've copied and pasted the post i made from another thread at the time:





"I feel I have to vent my anger at you ladies. I've had a horrible day and am so worn out.



I went to see the consultant oncologist today, at least that's who I thought I was seeing. I'd had a call a couple of days ago from her secretary to change my appt time as she had a meeting at the original time. Fine, I said. So I turn up and get suspicions that the oncologist isn't in the clinic. A nurse comes out and explains that the consultant is away today so I will see her registrar instead. I saw the doctor coming in and out of the room and immediately wasn't comfortable. I know I shouldn't make snap judgements but she didn't even look as old as me (I'm nearly 32), she looked very timid and just generally inexperienced.



After over an hour past my appt time I was called in. I felt more uncomfortable face to face with her but had to listen. She started telling me how I would be having chemo, radiation and hormone treatment. I thought I'd misheard but she mentioned radiation again. I stopped her and said "really? I didn't think I could have any more radiation?". I also didn't think women usually had radiation after a BMX but that's another thing. She started looking at her computer screen and clicking about and all I remember was her saying mastectomy and radiotherapy so I pointed out that I had already had my lifetime dose of radiotherapy which still didn't alarm her. So I then mentioned that the radiation had caused my breast cancer so I wouldn't be having any more of that thank you very much!



She then agreed I "probably " wouldn't have that so moved onto chemo. She began by informing me that it can "make you very tired, feel sick, you'll lose your hair". "No shit Sherlock! Have you even looked at my history?!" I didn't say that but it was probably written on my face. She said I would get the E-CMF regimen so I enquirer whether it was safe for me to have epirubicin after having previously had doxorubicin for lymphoma. She didn't know, and didn't know what treatment I'd had before and I'm guessing by now that she hadn't even known I'd had lymphoma. She again said it was something she'd have to check but that if I couldn't have the 'E' that I would have Taxotere instead. I asked about risk of permanent hair loss as I've seen it mentioned several times on these boards and other sites but she dismissed it. Then, realising she wasn't even going to being it up, I asked her if I could use cold caps to try and keep my hair. She did say I could and wrote it on a form somewhere. Why didn't she offer me this before?! I asked her the chances of it working and she said "50/50". Basically, she had no idea.



While she was filling out a chemotherapy consent form I began welling up. I was terrified that here was someone who had no idea about me or my medical history and was making decisions based on what is 'normally' done. Also, the fact that she was not a consultant and surely it's not her job to make such big decisions like this. I wondered how I was going to refuse to sign the form and say I wanted to see the consultant without sounding rude but I had to. I simply asked if I could come back next week to see Dr S and talk about it with her.



I expected today to see a consultant who had thoroughly looked at my case and my history and made decisions based on that. I also expected to be told of the statistics and the benefit of chemo and why I should have it (she did mention the size of the tumour which is probably the main factor). I had imagined that I had been discussed in a team meeting where a course of action had been agreed amongst other doctors, not just made up on the spot. There had been a nurse present in the consultation but who didn't say a word and as I left, visibly upset, didn't bother coming out with me to see if I was okay. I felt so alone. I went over to the breast care unit where they were holding a clinic and asked to speak to one of the specialist nurses who has been there when I got my diagnosis and pathology results. She and her colleague were so supportive and understanding and even mentioned that the particular doctor I saw had caused "patient anxiety" before. They told me to forget about today and focus on seeing my consultant next week. They did try and get me an appt for this Friday but there weren't any available. One of the nurses used to be a chemo nurse so I was able to ask her some questions and she was very optimistic about the use of the cold caps. I came away feeling better but am so upset that I had a wasted journey/day. I had been preparing to be told I would need chemo for the last week and to hear it the way I did didn't help. It is still hard to accept hearing it even when you're expecting it. Part of me had been hoping they'd say it wasn't really necessary so I could try and get on with my life. But I also want to do it to give myself a better chance of cure. Either way, today was a complete nightmare and I'm so exhausted after all the crying I did! "



Things went much better last week! Should start chemo in the next 2-3 weeks...

Michelle, Your appointment sounds awful.  Since you seem to have a chemo plan, I assume you got it sorted and saw the consultant who was better informed.  I see the same oncologist that I saw for Hodgkin's follow-up, and even she slipped once and said "Maybe we'll do radiation."  I had to remind her that was not an option. 

Can any of you tell me what types of tests you have had to check on your heart and lung function, or how you knew you had a problem?  I have had mild shortness of breath and rapid pulse for the last several months.  I don't know if it's heart, lung, drug related (I've added tamoxifen and warfarin in this time) or these implants squeezing my lungs:)  I had an EKG and a CT angiogram so far.  I don't have the full results yet, but was told they were "fairly normal".  As soon as I am recovered from this last surgery I guess it's time to see a cardiologist.

Hi all. I thought this would be the best place to ask my question as we're a bunch of 'oddities' and reckon it's my best chance of finding someone in the same boat!



As I am ER+, before I started chemo my onc ordered a blood test to check my ovarian function to help them decide which hormone therapy to put me on once chemo is over. I asked the registrar today (not the same one who terrified me last time!) who quickly looked and said my oestrogen levels were very low so they'd probably treat me as post-menopausal (so an AI, rather than tamoxifen) but we'd think about it and decide later on.



I'd had menopausal symptoms while on ABVD and my periods stopped for a while (at17!). They came and went again and pretty much disappeared after the chemo I had with my bone marrow transplant, although I've had maybe two random ones in in the 12 years since then.



I've read a little about younger women who take an AI such as Arimidex because they have had chemo-induced menopause but it is quite common, as it was for me, for that to reverse in time. I think because I have had so much prior chemo and radiation my ovaries are pretty much screwed but worry that if they do at some point recover that I will not be taking the appropriate treatment to prevent a recurrence of my BC.



So, have any of you who are hormone receptor + gone through menopause early and therefore been one of the few to take an aromatase inhibitor at a young age? I am 32.