Did you have surgery w/o doing chemo?
 

Hi everyone,
This is my first post on this forum.
I was diagnosed in September 2015, Her2+ er- pr- , stage IIb breast cancer in my left breast. I did treatments of herceptin and perjeta only from October thru May and they reduced the tumor from 5.5cm to small enough for a lumpectomy.

We did not get clear margins and began to use tdm1 / kadcyla to get rid of the residual cancer. By October 2016 I had a clear pet scan. Stayed on kadcyla thru March 2017 to reduce chance of recurrence. Then started on herceptin.

Unfortunately, I found a lump in the same area a few weeks ago. MRI revealed another 5+cm mass. No lymph node involvement. The oncologist recommended getting a mastectomy right away. Second opinions have recommended having chemo before the surgery.

Currently I'm waiting for a pet scan to be scheduled to make sure there is not disease in other parts of the body. I began taking artemisinin, Graviola, cbd oil, and pau d'arco, to hopefully reduce spreading while I'm waiting for surgery to be happen. Got back on a rigorous anti cancer diet.

I'm wondering whether to do chemo before the surgery or not.

I was hoping to avoid chemo, due to toxicity, peripheral neuropathy, and reduction of overall health. However if I do chemo, it is possible that the surgery could be a lumpectomy instead of a mastectomy. I'm not crazy about either having an implant or having a lopsided chest.

I would love to hear from any of you her2+ er-pr- sisters who did surgery and not chemo. What was your outcome?

Thanks for sharing your experiences.

Re: Did you have surgery w/o doing chemo?
 

Hi Vicki
I went along with my surgeon's recommendation of surgery first(lumpectomy). Chemo wasn't discussed until I got he HER2+ dx. I did 6x TCH, then continued with Herceptin for a year. I also had 33 radiation after chemo ended. My only recommendation is to avoid taxotere. I am in the 10% that didn't get my hair to regrow (I have about a third of what I had pre-chemo). Yes I am very happy to be 3 years of NED since dx but as a working woman age 52 I would be a lot happier if I had my hair back. It's a little, vain, thing but I would have preferred to know the real statistics about treatment. I commend you for researching and reaching out for information. Stay strong and be your own best advocate.

Re: Did you have surgery w/o doing chemo?
 

Hi Donna,
Thanks for the warning re. taxotere. I'm sorry that you had to find out the hard way about this side effect. Good advice about being your own best advocate.

I'm living in the unknown, gathering data to decide whether to do chemo or not, along with surgery.

I'm trying to make decisions from a calm, informed place, rather than a fearful, urgent mentality.

I'd like to hear to people who haven't done chemo with surgery, if anyone can tell me their experience.

Thanks!

Re: Did you have surgery w/o doing chemo?
 

If you don't do the therapy before the surgery you will lose the opportunity to find out if the treatment is effective (by seeing the tumor shrink) and be left to wait and wait to see if you break a bone, get short of breath or get liver involvement because that treatment was not effective, by which time changing to another more effective therapy may be too late to do much but gain you some months. Treatments are most effective when given when there is not a lot of bulk of disease and before the cancer has spread widely to other organs. It might be helpful find out if your bone marrow is clear, but this is usually only possible in Germany or with some clinical trials like I-Spy.

In addition her2+ tumors are usually quite angiogenic and there is at least a theoretical argument to do a smaller than a lesser surgery to minimize chances of spread/recurrence.

I am not advising you go one way or the other, just to get as many options as you need and read as much as you can to help decide between the options with your eyes wide open

Best of luck with your decision

Lani

Re: Did you have surgery w/o doing chemo?
 

Thanks, Lani, for sharing your understanding and knowledge about her2+ cancer. I understand about the value of the neo adjuvant treatment in shrinking the tumor so you know the treatment is effective.

What you're saying about angiogenisis is interesting. I wonder if there are holistic ways to deal with the angiogenisis to prevent growth.

I'm considering mastectomy without any chemo before or after. Or if chemo is not going to compromise my long term health, then do that and save the breast with just a lumpectomy and then do radiation.

I've got a pet scan tomorrow, and will be doing a biopsy soon.

Vicki

Re: Did you have surgery w/o doing chemo?
 

Hi Vicki,

I did a double mastectomy, and then tried to use natural therapies and diet instead of chemo. I have been in a constant battle since being diagnosed Stage IV. If I was to do it over, I would do chemo first to shrink or eliminate the tumor. I have implants and I hate them, they are hard cold objects that lie on top of my ribs. I would remove them, but I am fighting metastatic disease right now.

Re: Did you have surgery w/o doing chemo?
 

Dear Waterdreamer,
In reading your profile and your post, my heart goes out to you for all that you have gone through. I can see from your picture with your beautiful children that you have a precious reason to live.

Thank you for sharing your experience, feelings about your implants, and your regrets about not doing chemo earlier. It is very helpful for me to hear this as I evaluate my decisions. I may not have the statistics to help me make decisions, but hearing other people's stories helps me a lot.

When I got the recurrence, I felt regret about not doing radiation, not giving myself regular self-examinations even while I was on treatment, and falling off the wagon with regard to my good diet. When I shared these regrets with a friend, she refused to let me wallow in my regret, telling me that she believed that I made the decisions that were right for me, and don't beat myself up with these self-criticisms. That felt affirming for me.

As I have gotten additional feedback about the factors that may have allowed the recurrence, I wish that I had gotten 2nd opinions about next steps when the I didn't have clear margins from the 1st surgery. My oncologist recommended going on Kadcyla (TDM-1) to clear up the remaining cancer, and that seemed like a good way to go. Since the recurrence, I have had people tell me that I should have gotten another surgery to deal with the margins after the 1st surgery, rather than go on Kadcyla.

I hope you can forgive yourself for your choices, I know that you did the best you could that resonated with your values and beliefs. It is not easy making decisions about how to deal with these things. It has helped me to affirm that in spite of appearances, something wonderful is going to come out of this situation.

At this point for me, all the options that I feel like I am faced with involve some kind of loss that I don't want to have. Mastectomy: loss of my breast & my physical beauty. Reconstruction: loss of naturalness, with having something artificial in my body, plus setting myself up for future surgery. Chemotherapy: loss of my good health, and nerve damage. Natural remedies: risk of spreading rather than retreating of the disease. I want to keep bringing my spirituality into the picture to guide my choices. It helps a lot to hear other people's experiences. Thank you for sharing yours.

Vicki

Re: Did you have surgery w/o doing chemo?
 

In 2012, I was diagnosed with dcis with possible microinvasive through ultrasound guided biopsy, her2 status was unknown, but it was very extensive. I saw three surgeons, two of them said that I just need mastectomy, my third opinion surgeon felt 75% chance that I had some invasive cancer somewhere through examination and I should do chemo first. I was very scared with chemo and I chose the easier option of just having surgery. Four and half years later, cancer came back in my axilla lymph nodes and lungs. Of course, I am regretful of not going with aggressive treatments at my first diagnosis.

Re: Did you have surgery w/o doing chemo?
 

My experience is that at stage 1, I had chemo (A/C) and radiation and it still came back and spread to my lung and skin. I went to the Cleveland Clinic and they recommended chemo (TCH) before mastectomy. Less than 2% cancer cells remaining when they did the mastectomy. Granted the chemo is tough but here I am 7 years later at stage 4 and so thankful even though I had to give up my breast. Sorry you are going thru this. Wishing you the best.

Re: Did you have surgery w/o doing chemo?
 

Hi Vikki. My wife is Vicky also. She had 3 tumours in multifocal pattern in 09 aged 49 and went for chemo first then mastectomy. Taxotere + FEC +H ..Pretty hard but hair all back within a year or so . A couple of recurrences since and now on maintainance Kadcyla with NED at last scan and very healthy and well. The main thing is to keep the tumour burden as low as possible and that means surgery and chemo in my opinion. If you get it under control even if it recurs its is much more manageable and if it's oligometastatic even cureable. Wish you well.

Re: Did you have surgery w/o doing chemo?
 

Thank you to those sharing their stories. It is interesting that even though some people did do chemo/surgery/radiation, they still had recurrence.

My PET scan report came back yesterday: no evidence of metastases. <sigh of relief>

My oncologist suggested that since I have already been on Kadcyla (9 months) and Herceptin (18 months), that if my tumor is still the same (HER2+/ER-/PR-) that he recommends getting a mastectomy and continuing on Herceptin, without further chemo. Others have recommended chemo.

I have a biopsy scheduled for June 19. If the receptor status has changed, I'll probably opt for chemo. If it is still HER2+, ER- PR-, then I don't know yet. Waiting is hard, as I've begun having sharp pains in the breast. After using a heating pad and Infrared light therapy, the pains subsided, but still happening a little.

vickyjohn: I appreciate your perspective about keeping the tumour burden as low as possible. My hesitation about chemo is that it compromises the immune system, making it too difficult for my own body to fight the disease. My immune system seem to get more compromised the longer I was on Kadcyla, as evidenced from getting one cold sore after another. My thinking is that because of that lowered immunity, I was bound to have a recurrence when I went off of it.

One thing about this forum, is that most people reading it are probably still trying to manage the disease. If someone cured their cancer and have moved on, they probably are not reading this forum any more. It would be good to hear their stories. Still, I appreciate hearing everyone's experiences.

Re: Did you have surgery w/o doing chemo?
 

First thing to learn and keep in mind about cancer is that it is SNEAKY and hard to control. (You know this.) And HER2 positive tumors can spread like wildfire (as mind did), and there is nothing our immune systems can do at that stage. The cancer will have its way. This is how cancer kills - barges right through our immune systems.

Many of us here and on other support sites have used a variety of methods and means to stay among the living. Most of us have needed more than one way to fight, and hopefully rid, our bodies of the cancer scourge.

I am not a doctor, but you will see by my signature that I have long experience and have been in close contact with hundreds of women who have had breast cancer diagnoses over nearly two decades. Please do not think that you will be a lesser person if you need chemo. There are side effects, but I am still here and do not have any really difficult lingering side effects from all my treatments.

Bodies do recover, and heal. That is what I kept in mind.

Re: Did you have surgery w/o doing chemo?
 

Just a short reply to send support your way. See my treatment below. Luckily everything my doctors plannned worked. Chemo first, not fun, but I would do it again. I was 58 at the time and was told that radiated skin did not reconstruct well. My life is good and I am happy with the choices I made. I wear bras with prosthesis and totally works for me. Luckily I have had no recurrence. My best to all.

Re: Did you have surgery w/o doing chemo?
 

Hi Vicki,
I don't visit as often as I once did so I am late in joining this conversation. I have little to offer by way of additional information. My story is short and simple: mastectomy, chemo, radiation, clear baseline PET, prophy mastectomy (I am flat, no reconstruction and no prosthetics) 18 months of blissful ignorance before metastasis, chemo, radiation, maintenance H&P and NEAD to current.

I hope you are doing well and have come to a peaceful conclusion regarding your treatment plan.