lumpectomy or mastectomy?

rawarrior

After having a routine mammogram come back with suspicious calcifications on 6/9, I was diagnosed last week 6/30 with IDC Grade 2 ER- PR-, HER2 (immunohistochemistry) in two locations in the right breast - 1.75 mm and 2 mm based on a breast biopsy. I have met with the surgeon, oncologist and coordinator. I am still awaiting an MRI appointment due to the fact that the two MRI machines in the area are being repaired. They are trying to find an appointment in nearby areas but no luck so far. I've read extensively the posts on this site and it has helped clarify and answer many questions. Thank you Beesie and all that have posted over the years!

I am trying to decide whether or not to have a lumpectomy (based on the breast biopsy this is an option unless the MRI shows otherwise) or a mastectomy. If I go with a mastectomy I don't have to wait for an MRI. I had originally thought that a mastectomy might be the way to go and be a more aggressive approach to reducing a recurrence given the fact that I have HER2. Because there are two tumors the amount of tissue that will be taken is expected to be quite large to allow for clear margins if I did a lumpectomy. However, I am learning that both lumpectomy and mastectomy have very similar survival rates and the mastectomy doesn't mean it will not metastasize at a later date. I've reviewed the thread on this site regarding the pros and cons of each and questions to ask oneself. I still find myself sitting squarely on the fence and need to make a decision as to whether I want to pursue the potential for a lumpectomy with the MRI or go forward with the mastectomy. If you had the option between the two procedures and are willing to share - which one did you choose and why? I understand that this is a personal choice, but I'm having difficulty figuring out and projecting forward what I can live with. Any other advice based on the diagnosis I've described?

I am so grateful that I have found this community at the start of this journey that I never expected to be on (and no one here did either).

ShetlandPony

Here is a good summary by our respected longtime BCO member Beesie:

Considerations: Lumpectomy w/Rads vs. UMX vs. BMX

https://community.breastcancer.org/forum/91/topics/868997?page=2#post_5665953

(Scroll to the top of the page to read the summary. My link annoying lands in the middle.)

Edit: I'm sorry, re-reading I see now that you have probably already found this.

1982M

Im not sure if my decision making process will be helpful but I’m willing to share. I’m sitting in an obscure place right now without a formal diagnosis, but with recognition I’m likely facing breast cancer. I was told I would be getting it removed no matter what. I asked the surgeon the differential diagnosis and she said a radial scar, but that’s unlikely. So not 100% cancer but 100% surgery.

What helped me was writing out some of the things that are important for me, while knowing that after everything I might not have a choice.

The tumour they found is in my left breast so after reading I decided I want to avoid radiation to spare my heart and lungs. I also knew having a nipple for me is important and same with reconstruction. I feel confident I want a mastectomy in my left breast if it’s cancerous, hopefully having a nipple sparing technique and implant reconstruction. But even not- I think mastectomy on my left breast if it’s cancerous will be the right choice for me.

Not getting radiation was the big decider for me. The other things that helped me decide were around reconstruction. I want options for the future around receiving radiation to my chest is needed in the future. I also want reconstruction options if I run into challenges with implant reconstruction. Radiation can damage the skin and make it more difficult to reconstruct if I ended up needing a mastectomy after I had lumpectomy and radiation.

I’m two steps ahead of myself, I know that. But I wanted to sort out all my feelings before I meet with the breast surgeon again. Im not worrying to much about my right breast till I know more other then if there are any signed of malignancy on my MRI I would try for a nipple and skin sparing bilateral mastectomy. If it’s clear I’ll balance symmetry, sensation, recurrence etc.

I’m sorry you have to make that decision. Wishing you the best in wherever you choose.

rawarrior

Thank you so much 1982M for sharing your thought/decision process. I really appreciate it. I had not thought of the impact of radiation regarding the skin and possible reconstruction. I hope your formal diagnosis comes soon so that you can move forward and not be in limbo. Wishing you all the best.

ShetlandPony thank you for responding and for the link. I have read it, but I think I will re-read again.

bcincolorado

Everyone has different reasons for their decisions on their surgery. If you have a nurse navigator at your cancer center they can help you as well on the best outcome for you. We all just want to get the cancer gone and life the best life possible. Best wishes on your surgery and treatment.

1982M

Thank you rawarrior. I’ll get my diagnosis on the July 21st. Or at-least biopsy and breast MRI results which should start the diagnosis and decision making process. Things are moving quickly, which I appreciate.

msphil

hello sweetie I was planning our 2nd marriage when i found lump in shower and diagnosed was told that mastectomy would be best for me. But I was thinking of lumpectomy going into new marriage but my then fiance said go for mastectomy I decided to go with it. And thank God I am this yr a 27yr Survivor. So I come here for Inspiration. Hope family friends got me thru and keeping Positive thoughts. We are here for you. Hang in there. msphil IDC stage2 0/3 nodes 3mo chemo before and after Lmast got married and then 7wks rads and 5yrs on tamoxifen.

farmgirl888

Look into IORT as well, if you are a candidate it's less radiation and considered as successful as WBR. Bets wishes.

ctmbsikia

The biggest driver for me was less invasive route, and if have bad luck and recur then I will chop one or both off. At diagnosis I was only a candidate for single mas. No regrets, but scanxiety is a real thing (for me at least), and I so envy the women here that do not have to do this. Something else to consider, forward protocol. Good luck!!!

Esther01

Very good points. I hadn't thought about radiation and effect on reconstruction.

I chose a lumpectomy with sentinel node biopsy (had several positive nodes) so I am about to begin 7 weeks of radiation. My plastic surgeon today said to wait 7 to 10 more days before beginning. I am confident to do so because I learned in the past few months that not all radiation centers are the same. I didn't have a good feeling about my first RO, so I self referred to a much more modern, state of the art center. I'm pleased with the choice. They use a device which measures your breathing during radiation so that when you breathe in and out, the radiation beam starts and stops in sync with your breathing, in order to protect your organs. I know two people who had radiation there and highly recommended it.

My (new) RO says that even though there may be a chance of an x-ray showing a little visual scarring on a lung, he has never in all of his years of practice seen any symptomatic lung issues from the radiation, and says I will be able to hike, climb, travel, etc without issue.

I was also confident to do it because there are integrative strategies for protecting your healthy cells while doing radiation. I already take systemic enzymes on an empty stomach a.m. and p.m. (ex. VitalzymXE or Vascuzyme) which helps break down scar tissue in the first place. It's very helpful for fighting cancer. Systemic enzymes can have a blood thinning effect though, so best to consult a doctor before taking them.

I will also be doing my twice weekly high dose IV vitamin C at 50 grams throughout radiation. This is not the same as taking vitamin C supplements which is a no-no. A study just came out in November 2020 showing the great benefit of high dose IV vitamin C (above 50g) in greatly reducing inflammation caused by radiation and prolonging life of those who took high dose IVC in the study. If anyone wants the article, just message me.

In addition, I'll be drinking a lot of water and using the approved lotions throughout.

Radiation can also raise your risk of lymphedema; there are strategies for reducing that risk as well.

Blessings to you as you plan and move ahead,

Esther

Elizabett

I was diagnosed with DCIS on July 8and saw the surgeon this Tuesday. I too am deciding between Lumpectomy or mastectomy. I am fortunate that the MRI found it as the mammogram 6 months ago did not see it. I am stage 0! That is great the bad news is it is high grade, has necrosis and negative for estrogen or progesterone receptors. I have severe asthma and am on a great med that is really helping but I absolutely, as I read in your post, do not want radiation and the doctor has offered radiation. I adamantly do not want radiation because it can damage my lungs and struggled for four years with coughing day and night and chest tightness , and lack of sleep. The fact, that this is likely to come back, and there is virtually no risk of return in this breast if I have a mastectomy - makes mastectomy the better choice for me. l read that some people have the lumpectomy and then they need more surgery for the margins and ended up with a mastectomy. I don't have the energy for more surgical intervention and I do not want radiation and if I have a mastectomy - no radiation / 0% return and mind is not invasive. Have a family history of breast cancer - mom had a radical mastectomy at 55 and no recurrence - my sister is currently endstage metastatic breast cancer after dx 12 years ago. I thought about having a reconstruction but decided I'd like to keep surgery, risk and complications to the minimum . We're still raising our grandchild of 13 and I need to go back to living in my car - and able to take care of her health needs.

I actually a lot to take in a few days. I talked with an amazing counselor yesterday Frankly, this diagnosis really shakes you up. It helped me considerably to put this in perspective. l never saw it coming. My Dr just added the MRI and I expected to go on my way My heart goes out to you and I hope my decision to avoid radiation to spare my lungs helps. Mastectomy without reconstruction - I'm not super busty - I've talked to several women who said they were fine without the reconstruction but it is a personal matter of what you can live with

My sister in law had invasive breast cancer and had a lumpectomy with radiation and she currently has more acute asthma than before. I'm a bit shocked I'm being asked to consider it because asthma is no fun and exhausting in itself - we've smoke intermittently through the summer due to fires - so it just seems common sense to lower your lung risk. Despite my objections the surgeon wanted me to meet with a radiologist. I'm stubbornly irish I fear - so that made this decision easier - no

Mastectomy seems a better alternative.

I am considering following up with hyperbaric oxygen that is available locally but it's pretty pricey but it can do a lot for your cells and the other thought was IV Vit C

therapy which considerably less expensive. The doctor asked me to wait until after surgery on the Vit C. My sister drank Essiac tea for years before the breast cancer metastisized. She swears by it.

I also don't know if I went with lumpectomy and risked surgery if I would escape reoccurence and would I have the opportunity to decide with the lowest risk of STage 0 where I am now plus avoid radiation .

We aren't risk takers - no variable rate mortage, don't gamble - so I'm going to take the least risk We're waiting on the Braca genetic test to come back.

I hope this is helpful. It's been a roller coaster of decision making and surprises since Tuesday andI feel so much better I've made a decision but it was a miserable process. I hope goes well for you. I hope you can sleep and get some rest. Best Wishes

Beesie

Elizabeth, the risk of a localized recurrence after a mastectomy is not 0%. It is approx. 1%-2%, and if the surgical margins are close (i.e. there is cancer right up against the chest wall or the skin), the risk could be higher. There are multiple discussion threads on this board about this, where people have returned after have a recurrence after a MX.

Although it would be unusual situation, with high grade DCIS, if there are cancer cells against chest wall sometimes radiation will be recommended. There are discussion threads on this too.

Lastly, if your diagnosis came about as a result of a core needle biopsy, because the needle only samples the tissue, there is always the possibility that something more might be lurking in the breast. When DCIS is found in a biopsy, in about 20% of cases, some invasive cancer (usually only a microinvasion, as I had, or something just slightly larger) will be found in the final pathology. In about 5% of cases, the finding is significant enough to change the treatment plan, possibly even adding chemo.

None of that is to discourage you from having the MX, but it's important to be aware of these risks prior to heading into surgery - and perhaps you are, but this wasn't clear from your post. Hopefully all goes well and your final diagnosis is Stage 0 DCIS and you have nice wide surgical margins. Wishing you the best of luck!

Elizabett

thanks for your reply. It was a mri guided needle biopsy. It’s near my pectoral muscle more to the side where the breast is less full. I am nervous about where it could go from here so I’m trying to lessen risk. They did also find cysts in my fibrous breast’s. I’m not very busty a scant b. Our 13 yr old returned home from vacation for a week. I don’t want her afraid. She’s seen too much cancer in the last yr among relatives want to just go on with my life without fear. There are no guarantees butI didn’t realize there could be more surprises once the breast is gone I intend to do high dose iv vit c but my doctor wants me to wait till she’s done can it go into the muscle tissue

Each day should be easier. I’m having trouble sleeping though tired the sticker shock should weR off soon