Who plots my treatment plan?

HeartShapedBox

Interesting, I've never heard of actually delaying surgery for just hormonal therapy, I stand corrected!

As far as lumpectomy on a small breast with a large tumor, I didn't mean to insinuate that it wasn't POSSIBLE (I was given the option). What I meant was on a very small breast (you describe a 4 cm mass as "about filling up your small breast on one side"), the removal of a larger amount of tissue doesn't leave much breast left. Even if a tumor shrinks with therapy, it can leave behind mass of scar tissue that will be removed, and to get clean margins the surgeon cuts out MORE tissue than the size of the mass.

My surgeon suggested that aesthetically a mastectomy might be preferable because of this dynamic (a flat "clean slate" instead of basically half a small breast). But for someone opting for a diep flap reconstruction, I'm sure good looking results are possible in a case like that.

abc54321

I know Heartshapedbox - it's all Very confusing to me right now.

I hope during the appointment on Tuesday, the oncologist will be able to give me more understanding of what my options are, and the probable outcomes of each.

MinusTwo

abc - so Alice & I between us have covered the medicare question. With traditional medicare you should be able to see whoever you want whenever you want for what ever you want. The only caveat it to make sure the doc accepts traditional medicare patients. This will include a second opinion and likely even a third opinion. I hope you did call & confirm this. Your surgeon's assistant is nuts.

AliceBastable

And on your original question, a.lot depends on what type of medical facility you go to. I went to a smallish hospital in the city where I live because it was the most convenient, and my primary and a few other doctors I've seen are on staff or affiliated. They have a breast health center, which is where I went for my (procrastinated) regular mammogram. When I got called with the results, they'd already set me up with an appointment in the same center for an ultrasound and possible biopsy. From there, I was given an appointment with one of their two breast surgeons, also in that location. I never had to look for a doctor or test facility on my own. The only one not in the breast center is my oncologist, who is in another medical building that is part of that hospital campus. And when a pre-op chest CT came back showing kidney cancer, the oncologist's nurse literally took me by the hand and led me a few feet down the hall to a urologist's office to get a quick appointment. The various offices have made all my appointments for tests, or gotten me on the call-back list. I haven't had to initiate anything, or even ask, since the original mammogram. Oh,and the genetic councilor is also right across the hall from the breast center, and they handled that appointment, too.

windingshores

I had my biopsy at a smallish city hospital's cancer center, like AliceBastable, and their post biopsy pathology had me as HER2+, and they told me I would do chemo and Herceptin. I had already shopped for wigs when I switched to a well-known cancer center for my surgery and treatment - and their pathology had me as HER2-.

There were other contradictions in my testing. Not saying this is relevant to anyone else, but I was disturbed enough to get three opinions in addition to the first small hospital. You do whatever you need to do until you are comfortable and confident.

I am also on a Medicare Advantage Plan but mine is a PPO. I can go to any doctors I want. If the Advantage Plan is an HMO there could be more limitations, not sure.

Sounds like you have a plan for now that you can stick with. Good luck!

abc54321

Thank you all!

I will post what the oncologist says/tells me after the Tuesday appointment. Hoping a mucinous tumor will shrink with some kind of medication.

abc54321

I saw the oncologist last week and will be having a cat scan next Monday, the 24th. Then will see the oncologist on the 26th to discuss the results.

I guess they are looking for or needing to rule out if the cancer has spread.

Still undecided on trying meds to shrink (as he might suggest, depending on the cat scan) or go ahead with a mastectomy now and just get it over with.

For those of you who have had one, (mastectomy) what do you think about this new dermal brassiere? I am going to investigate this, and also the "nipple saving" technique, as I have very small breasts with a large (4 cm) tumor and my first surgeon told me, "You will lose your nipple."

I am seeing Dr. Lim (surgeon from the article below) next week, too, and will fine out if she can save it. I will switch doctors, if she can. And probably have this new brassiere.

https://www.tmc.edu/news/2019/11/a-new-way-to-reconstruct-breasts-inspired-by-sewing/

HeartShapedBox

Whether or not a Dr is able to save your nipple will depend not just or surgical ability but more importantly the location of the tumor. If the tumor is close to the nipple they need to remove it to avoid potentially missed cancer cells. The other "dermal bra" above-muscle implant procedure may also be ruled out by tumor size and location. If the tumor is in close proximity to the chest wall (as mine was), you would need the usual under-muscle implant because they worry about cancer returning to the chest wall area, and need a clear view of it for future scans (not being blocked by an implant). You won't be able to make these types of surgical decisions until you get a breast MRI to help assess tumor location in relation to nipple and chest wall (which could be close to both, if it's a large tumor in a small breast). If you and your MO decide to go ahead with hormone therapy first, that could potentially (but not necessarily) shrink things down to get cleaner margins away from nipple ans chest wall so that you could explore those options, so make your surgeon and MO are aware of your goals and can best advise how to achieve them, if possible.

MinusTwo

abc - If you are fortunate enough to be with Sherry Lim - in my opinion you have one of the absolute best surgeons in the entire medical center. She was recommended to me by my oncologist, my OB/Gyn and a PCP. And her partner, Dr. Rosenberg, operated on friends of mine for other cancers. When I first met her I asked why I should consider her since I lived in the same city with MD Anderson. She replied that she believed I had a fairly uncomplicated cancer, but if she was anything that appeared to be odd or requiring more cutting edge research than she was comfortable with, she would immediately recommend I switch to MDA. She did her fellowship at MDA and knows lots of the docs. That suited me since I didn't particularly want the 'clinic' atmosphere.

I didn't use. Dr. Spigel for reconstruction, but did go to a doc in that same practice. The work is amazing. You'll need to discuss with the plastic surgeons what might or might not work with your particular body and surgery. You can keep a couple of options in mind for now.

HeartShaped is correct - Even after an MRI, no one would likely promise an NSM (nipple sparing mastectomy) until they actually get in and see how extensive the cancer is. It wouldn't be save to leave cancer cells behind.

And as discussed above, the entire plan of treatment should be directed by the oncologist if you're even considering chemo. He/She will consult with the surgeon, then usually take that tentative plan to the 'tumor board' that meets weekly, and discuss the best way forward with all the surgeons, plastic surgeons, radiation oncologists, medical oncologists, cardiologists, pulmonologists, etc.

When you get a minute, please do into My Profile and enter your diagnosis to date & any treatment plans when they are finalized. Once you do enter & make it 'public', members here will be better able to answer your questions.

abc54321

I will be seeing my first recommended plastic surgeon today and will see what he says.

Then will see Dr. Lim next week, and see what she says and which plastic surgeon she suggests I see.

I want to know all my options and what each doctor says. I realize they may not be able to guarantee anything without either further testing or during the actual surgery, but it will be nice to compare what each says.

I will see my oncologist next week, after the pet scan, and see what he says now that the tumor board has reviewed my case.

So much in my head right now. It seems there is a lot to be considered. Ugh.

MinusTwo

abc - doing your research is a good plan. Be sure to treat yourself gently. Try to take time off from the inevitable worrying with some good distractions.

abc54321

Back with another change of mind.

After consults with plastic surgeons and reading about mastectomies and reconstructions and the length of hospital stays, re-done surgeries, medications, etc., I am now standing in the court of having a mastectomy without reconstruction. I have such small breasts, I really don't think it would bother me to completely lose one and having a scar.

I would have the surgery one day and go home the next. This really appeals to me now, over saving a nipple or breast.

Oncologist ordered Letrozole for me, but said it was not 100% guaranteed it would shrink the tumor enough for a lumpectomy, so instead of months of wondering and taking drugs, only to have the possibility of it not shrinking and still having to have a mastectomy, I think going ahead with surgery/mastectomy now makes more sense to me, for my situation.

Any thoughts or warnings? Thank you all for any input, I really appreciate all posts.

MinusTwo

abc - we all understand this is a really hard choice, but a very personal one.

I'm assuming you are NOT HER2+? Sounds like you're talking about a single mastectomy? Reconstruction can always be considered later if you're unhappy with the results.

It really would be helpful if you went to My Profile and posted your diagnosis & treatment plans to date. Have you set a surgery date yet?

abc54321

Thank you, Minus Two - I finally got to the right place on my profile and filled out what I could.

Yes, you are correct, I am Not HER2+ and it's the right breast, only.

I had my pet scan this past Monday and there were no other places noted, other than the big lump and that one node they found during the biopsy.

The surgery might be next week, but if not then, the next week.

Salamandra

If your tumor is ER+, then chances are you will be taking letrozole (or something like it) for years in any case after the mastectomy anyway.

I remember for me that time ticked by very very slowly at the early stages, because everything feels so unknown and scary, and months can feel like ages. But I would recommend you consider giving the letrozole a shot. In the larger scheme of things, whether you have surgery first and then start letrozole or start letrozole and then have surgery a few months later... to me it seems like a worthy option to explore if it gives you the shot at a lower impact (medically and cosmetically) surgery.

MinusTwo

abc - Thanks for the update. Just FYI - under 'my profile', you have to make it public for it to show at the bottom of your posts.

Please do keep us updated.

abc54321

Thank you, MinusTwo! I changed it to public!

abc54321

I'm back and staying on this post because I can only handle one thing at a time these days. I was reading posts in other forums, but to pick out answers from so many is confusing.

I have decided to not have any reconstruction/nipple saving, as I was told it would be around a five day hospital stay, so I'm just going for an overnight stay and having a mastectomy, so I can get on with my life. The oncologist wanted me to take Letrozole for about six months to see if this 4X3cm tumor would shrink, but after reading the side effects, I didn't want to go through all that to only find out it didn't shrink and I would need a mast. anyway.

I am having my single mast/nodes/drains on march 13th and all I want to know is how long before I will not need my husband to help me do things around the house. How long before I can send him off to work and take care of myself - fixing breakfast, coffee, do laundry, etc., if I am careful about lifting heavy things? How long before you felt like riding in a car?

For those who have had a mastectomy, how is your recovery going/how was it - what have you discovered helps; what have you discovered avoiding? What should I make sure to have on hand at the house beforehand? I'm not yet in panic mode, but feel I need to go buy everything in the world, just to have things on hand, but not sure what to buy. I will be stocking up on food - just had our stand up freezer fixed to store more - because I don't know how long before I could go to the grocery store by myself.etc., if I am careful about lifting heavy things? How long before you felt like riding in a car?

But the most important for me is when can I "fake it" so no one knows I had anything done? I have a best friend who is stage 4 lung cancer and she gets upset and cries when I have a hangnail (I am her only emotional support), so she does not know. She lives in another state, so we have to drive 4 hours to see her. Then 4 hours back home. How many weeks before I could stand a car ride like that, and act my normal self when I am with her?

Oh, and pain management. The only thing I ever take for any pain is either aspirin or ibuprofen. Pain meds usually don't take away a hard pain, but only make me sick and groggy. That was when I took a hydrocodone with acetaminafen after wrist surgery. So I have no clue as to what I might need for pain - would an ibuprofen even help? I forgot to ask the surgeon, and will, but wanted to ask those who have had this done.

Any other hints or tips? I feel I don't even know what to ask. My surgeon's answer to a few questions were, "Depends on how long the drains are in." Did any of you shower with drains? I see other people have - my mind is racing, and my thoughts jump from here to there.

Thank you.